How Do We Repair the Ableism in Our Family Tree, and Grow An Inclusive Future?
A Conversation with Jennifer Natalya Fink on sowing seeds of biodiversity to cultivate proud, just and joyful families through her latest book, All Our Families
When I met with Jennifer via Zoom to talk about her book, All Our Families: Disability Lineage and the Future of Kinship, I was so excited to meet this radical, passionate and brilliant scholar. It is always emotional to get to talk with a parent who, like me, is raising a neurodivergent kid. I resonate with her call to action to create belonging, inclusivity and joy in all our families. Her book offered something I have been thirsty for.
Fink directs the Program in Disability Studies and is a Professor of English at Georgetown University. But as she writes, she is “first and foremost a mother,” and the“transformative experience of parenting her autistic daughter is the center of her work.”
I found in her book mind-blowing theoretical and political points, and also really human moments. Jennifer draws us in with tender details of her own extended family‘s struggle with ableism. She rejects the trauma model of disability, and gives historical context for how it came about. She weaves in queer and crip theory to show how kinship can include both chosen and inherited family members. Then, she calls us to “forge a resilient, anti-ableist, more inclusive sense of lineage.” Fink invites us to reinvent and re-lineate until our definition of family is radically redefined. We do this for our own sakes, and for the generations to come, which will include disabled kin. Our conversation ranged over an hour, and we could have talked for hours more; I’ve condensed the interview for this article, and added sub-headings to help readers find what they most need to hear. – Kate Lynch
MUTHA: I picked up your book at a point where I was ready to have my mind blown. I have a kid with disabilities and a husband with a disability. We’re immersed in neurodiversity in our home, in our community, and to some extent family as well.
Jennifer Natalya Fink: I’m so glad that the book had some positive impact for you, because you’re the person I’m writing for. On a heart level and a mind level, I wanted to reach parents of disabled kids.
I offer new ways of thinking coming out of the cutting edge of disability studies and disability justice. I connect that to my own story, and make that thinking as accessible as possible. I bring the tools that I have as a writer and scholar to this project, as well as my lived experience: My everyday, ordinary life of parenting in the world.
I was haunted by these family stories of ableism and de-lineation. Of disabled people being written out of the family story, leaving no traces for the next generation, so disability seems like a rare, extraordinary thing, instead of an ordinary part of family life and lineage. I want to create a world that’s less ableist and more integrated for our disabled kids. As parents, we are the first teachers. We are producers of culture and standards.
Diagnosis
MUTHA: I love how you touch on certain hot points for parents of disabled kids: Diagnoses, holidays, public meltdowns. Would you mind talking about that sunny day in autumn when you were sitting with your partner, and you were watching your 2 1/2 year old daughter play, and you had just received her diagnosis?
Jennifer Natalya Fink: It was this weird, complicated moment. On the one hand, nothing had changed. You know, my daughter is delightful and challenging. She was in delightful mode at that moment. It’s a beautiful day, she’s playing and I’m holding this paper that in some way has rewritten the whole narrative of our family. It was and wasn’t a shock.
“Suddenly, my child and I were stripped of our identities. Who were we? ‘Autistic.’ It felt like a wound.”
I did feel this sort of solidarity with my daughter. It was this “You and me against the world” feeling. I did accept the diagnosis, but its meaning was opaque and wounding in equal measure. And stark in some way.
I had an idea of what my kid was allowed to be, and this was not it. It also didn’t capture all the complexity of who she is. Which can’t be separated from her neurodiversity, but can’t be collapsed down to it.
So I was feeling all of that. And also feeling very alone, despite having a great partner and career. I felt cut off. From other parents, from my own family. This was somehow outside the narrative — outside the story we tell about what a family is.
And now, many years later, I ask, “Why was that? It didn’t have to be like that. What if I had understood my disability lineage differently? What if we’d been connected to community? To our own disabled kin?”
Community
MUTHA: There were three of us from my prenatal yoga class, our kids were born 15 days apart, and they are all neurodivergent. Each of us was in a different place on the journey, but we were helping each other along, and I know how unique and amazing that is. What holds parents back from seeking community for themselves and their kids?
Jennifer Natalya Fink: We need spaces of community and connection, for disabled kids to have peers growing up. And for parents! We need community with other parents of disabled people. It’s not even understood as a need. The social workers, the school teachers, the systems we intersect with, nobody says, “What you really need is to talk to other parents. What you really need is to find a community for your kid.” Even if you’re totally for mainstreaming and integration. These things aren’t opposed.
When you find that community of parents, you can say, “Your kid has similar sensory needs to my kid, what dentist do you go to?” There’s that unofficial expertise. Disability community gives kids the tools to center their own needs and desires, and to become self-advocates.
“By thinking of us as part of a larger web of disabled ancestors, their families, and caregivers, we share disability. Disability becomes woven into the fabric of the larger cultural story of what it is to be human.”
I think what keeps parents from doing that, (besides nobody telling them they should) is, you have to fully own that, “Yes, my kid has a disability.” You have to be comfortable enough with this as an identity. It’s so stigmatized. There’s so much shame. That traumatizing stigma and shame — that we inherit from our families — that’s at the root of a lot of it.
MUTHA: It is at the root of a lot of it. That’s what I learned from this book.
Jennifer: When we received the diagnosis, there was no sense — from the medical community, educators, or clinicians — of disability as an identity. There was no sense of this as a way to be a flourishing person in the world. That would have helped. So would understanding my own disability lineage. Those two things were missing, and would have led to a completely different feeling on that day.
Mainstream Western psychology says, “You’re going to be on this journey of coming to terms with this terrible thing.” The assumptions beneath that are ableist. This isn’t only an individual experience. There’s a community of disabled people. There’s a community of autistic people, and you need to find your people. And there is disability gain — value, knowledge, and joy in disabled lives.
“Reintegrating what we already know about our disabled family members can powerfully combat ableism and create a living disability lineage.”
We’d be better parents if, instead of viewing this as individual trauma, we resist the trauma narrative, find community and find our disability lineage.
Stories
MUTHA: I would read a passage of your book, and then I had to write about the memories it triggered. It got me thinking about how I can ask those questions within my own family. It feels really hard. While I’m a brave person, I think growing up queer you had to be more courageous. For a long time, I felt central to the norm.
Jennifer Natalya Fink: That’s really what I want the book to do: Help people think about their own disability lineage. My story is mine. It’s important to me because it’s mine, but I’m telling it to help other people begin this process.
I don’t want to whitewash or sugarcoat anything. The stories are really complex. They’re so buried, and ableism makes it difficult to even talk about them. But they exist in every family, because disability is common. Every family story is a disability story, if you so choose to tell it.
I looked at my own experience, and said, “Why was this very ordinary thing traumatic? Why, I of all people, embracer of diversity in all its forms, freak, queer… Why was this traumatic for me?”
MUTHA: What I know about trauma is that it will impact all our relationships. If we’re starting off from a traumatized place, everything will be anxiety ridden. It will be harder to make decisions and to connect.
Jennifer Natalya Fink: Absolutely, and it’s unnecessary. That was the starting place for thinking about why we construct disability as trauma.
“We all come from some sort of family system, however buried, displaced, ruptured, or fucked-up. And within those systems are disabled ancestors ripe for reclamation.”
Then I linked it to de-lineation. When we have a child with a disability, we can only construe it as traumatic and unprecedented. Instead of looking at a rich history of how disabled people were integrated into families, there’s only the tragic history of institutionalization and de-lineation. So I wanted to challenge this paradigm.
Biodiversity
MUTHA: One of the assumptions you unpack in the book is the one underlying Andrew Solomon’s book, Far From The Tree. I was like, “Whoa, there she goes, right for the jugular!” Haha.
Jennifer Natalya Fink: Everybody loves him except me, haha…
You know, these conversations are evolving. There were a set of assumptions underlying his book that needed to be interrogated from a Disability Justice position. This idea that a child with a certain diagnosis is radically other — and the ‘normal’ parent, has to make sense of it — is a false, ableist, and dangerous assumption. I’m not saying you shouldn’t read it, I just want to move the conversation beyond that. I think there’s a lot of damage in seeing your child as other, honestly.
So many of our ideas about norms come directly from Nazi Germany, which borrowed a few from the rhetoric of enslavement of Black people. Is that really who we want to be? We need to reject these fascist norms and embrace body-mind diversity.
Anyone who studies trees knows that biodiversity is where it’s at. That’s true for humans, too. We have to, on every level, understand that. We all have a deep thirst for knowing our people, knowing our ancestry, feeling seen and represented.
MUTHA: I really appreciated the historical context you gave. It wasn’t always like this. At the same time as these oppressive systems, Disability Justice movements were rising up against them. This quote: “The discarded fruit seeds the orchard” really tied it together for me.
Stimming and Stuffing
MUTHA: You found a community of parents of autistic kids. And then the birthday party invitations stopped coming, because their kids had begun speaking and your daughter was not. Oof!
But then you write about that Thanksgiving when you got together with other families of non-speaking autistic kids. You called it “stimming and stuffing.” That really stuck with me.
Jennifer Natalya Fink: I’m not a group person. My partner is a community organizer. In our community, everyone knows my partner. I am very nerdy, I have my three friends, I’m that kind of person, you know? So for me to get my mind around community is always tough. I did it because I understood my daughter needed a community. I didn’t know that I did. And I really did, as a parent.
Mia Mingus has this great phrase: Access intimacy. Another disabled family, they just get it. We get it. I don’t have to keep explaining that she’s not hurting anyone when she’s stimming, you know? So I think that “stimming and stuffing’’ is the idea that we need both: We need to be fully integrated into society, and we need our own spaces. Too often, it’s either/or. I know as a queer person, there are always these arguments about assimilation and rights versus separate space, and we need both.
Growing up queer in the 70s, 80s, and early 90s, when you came out, you came out into a family where you had no queer elders in your family, because everyone was closeted or cut off. Maybe Aunt Sue was queer, but she was disinherited. So you made family out of your friends. There are ways that works and ways that doesn’t work. Everyone needs lineage, ancestry, family of blood and kinship. Everyone has a right to their lineage.
So I was thinking about challenges to nuclear families, the way kinship structures can be opened up in ways that are productive. I’m also challenging the idea that there’s always an ableist nuclear family.
There’s the chosen family that I think everybody who’s in any sort of minority absolutely needs. I need it as a queer person. My daughter needs autistic kin. You also need to find it in your family of origin. If you’re horribly alienated and you had abusive parents, then find it in extended family. You need to see yourself, to name and claim your disability lineage, in your family of origin and in the larger world. People like you existed before, and what happened to them matters.
Safety
MUTHA: You wrote about those with invisible disabilities. Being seen in our wholeness is so essential, and you write about being “contingently included as a false self.” That phrase, that was a lot for me.
Jennifer Natalya Fink: There’s having to cope with what happens when a disability becomes visible in public, and there’s the history of how public space became a site for criminalizing disabled people. Being disabled in public is itself a kind of crime in a society that doesn’t accept or integrate body-mind diversity. There’s a visibility piece and an inauthenticity piece. The violence that does is double.
“Negotiating public space can be terrifying, humiliating, shaming, and dangerous for disabled people and their families. But we have both the same right and the same need to be in public as anyone else.”
MUTHA: As parents, we’re the buffer between our child and the wider world, and navigating that is hard. I used to “out” my son when he was younger. You write about how ableist that is. But it felt safer.
Jennifer Natalya Fink: Ableism isn’t just out there in the culture. We all internalize it, and I see how I internalized it. I implicate myself. There’s not a specific thing I did wrong when I think of my parenting, though I’m sure there were many, but just knowing that in some way I struggled to accept and own this, and that can’t have been good for my daughter.
I think that’s the whole complexity of what it is to truly be integrated in society. Still, we are at such a fundamentally violent and ableist place in our culture, in terms of public space and disabled bodies and minds, both visible and invisible. The concept of disability lineage can help de-stigmatize disability, and make it safer for our families in public spaces.
“I was usually… the target of strangers’ wrath when my daughter displayed her disabled body-mind in public. The sounds and movements of her body — which were not harming anyone — were treated as my fault: as an epic, public, parenting fail.”
I need to be able to go to a store with my kid and not worry that someone’s going to call a guard because of how she’s behaving. When we go into a store, if she has a meltdown or she’s stimming, that could invite violence. Even just stimming, which is totally harmless. It’s just a particular way of being in public. So we need to change that, to normalize the presence of disabled people in our families and in public.
We don’t owe people an explanation. I’ve evolved in my strategies, which can change moment to moment, and are always aimed at:
- Safety first,
- Protect my child,
- Transform (and educate) the public.
A disabled person’s body-mind in public makes other people uncomfortable, because they’re reminded that disability is part of the human experience. It’s not that my kid is so distracting! It’s about ableism. It’s not our family’s or our kids’ job to absorb that. We just have to stop absorbing it.
“Do it to honor your ancestors and as a gift to your descendants.”
What To Do
MUTHA: What do you most want parents of disabled kids to do?
Jennifer Natalya Fink:
- Value your kids exactly as they are.
- Find your disability community, for your kid and for yourself.
- Find your disability lineage.
- Leave a legacy of pride in your child’s disability for the next generation.
If we all do that, I think it does change things, for all our families. It has for mine.
Parents, I highly recommend reading All Our Families: Disability Lineage and the Future of Kinship, which is out now from Beacon Press. Do it to honor and celebrate your disability lineage. I can’t wait to hear your thoughts about the book.
Check out: Kate’s Instagram and the Mindfully Parenting Atypical Kids Podcast
Feature photo by Annie Spratt on Unsplash
About the Author
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